Symptom Management: Spasticity and Mobility

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Top MS experts discuss how to recognize and deal with spasticity, the latest mobility devices to make your life easier, and therapies and medications available to treat spasticity.

This program is sponsored through an educational grant from MS ActiveSource, a Biogen, Inc. educational program.

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Welcome to this HealthTalk webcast. Before we begin, we remind you that the opinions expressed on this webcast are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you.

Dick Foley:
Have you ever experienced a muscle spasm so intense that it woke you from a sound sleep? How do you deal with the stiffness of sustained muscle contractions? And, can there really be a bright side to having spasticity?

Two doctors who are very familiar with spasticity and mobility limitations, will share with us how MS patients can best manage these symptoms, as well as talk about the latest mobility devices to make your life a little easier. You'll also hear from Pam Saxon, an MS patient, who shares what it takes to pull yourself up when times are tough.

This program is sponsored through an educational grant from MS ActiveSource, a Biogen Incorporated educational program. We would like to thank MS ActiveSource for their commitment to patient education.

Before we continue, I would like to remind you that the opinions expressed on this program are solely the views of our guests, they are not necessarily the views of HealthTalk, our sponsor, or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you.

Let me introduce our first guest. She is Dr. Karen Blitz-Shabbir, the director of the Northshore MS Care Center in East Meadow, N.Y. Dr. Blitz-Shabbir, thanks very much for joining us.

Dick:
Also with us on today's program is Dr. Mariko Kita, who is a neurologist and director of the MS Center at Virginia Mason Medical Center in Seattle. Welcome to our program Dr. Kita.

Dr. Mariko Kita:
Good evening everyone. Thank you for having me here.

Dick:
Nice to have you with us. In addition to our two MS doctors, is MS patient, Pam Saxon, from Alabama. Over the years, Pam has faced many life-altering experiences, MS being just one of them. She found out long ago that the decisions you make now can impact you forever. Pam, we are delighted that you could join us tonight as well.

Pam:
Thank you. It's nice to be here.

Dick:
Dr. Kita, can you tell us exactly what spasticity is?

Dr. Kita:
Well, spasticity is a medical term that refers to muscle stiffness. It's often accompanied by hyperreflexia or extra jumpy reflexes. People who experience spasticity can also experience muscle spasms, and the spasms can manifest themselves in a number of ways, such as a sustained contraction, like once you straighten your leg out it takes a long time for it to relax and bend again, or it can produce unprovoked jerking of a limb.

Spasticity frequently affects the legs, but can also affect the arms, and like many things in MS, spasticity can be very bothersome on some days and less noticeable on others. That can be related to a number of factors, like increased body temperature, or presence of an infection or significant fatigue, all of which can make spasticity worse, and if spasticity is really severe and unpredictable, it can affect the way your walk or impact your ability to transfer.

Dick:
Can spasticity occur in all people living with MS?

Dr. Kita:
Spasticity in one form or another, yes, can occur, and in the mildest of form, it is just a very jerky knee, and in the most severe of form, it would be a leg that you can't even bend.

Dick:
How about the triggers? Do we know what may be the triggers for episodes of spasticity?

Dr. Kita:
We certainly know that things can impact the nervous system irritability, so an infection, or tremendous constipation, or things like that that can really irritate the nervous system can definitely make spasticity worse. And then, of course, temperature, we know, can make spasticity worse.

Dick:
I'm assuming that it probably, in many cases, at least, would limit mobility.

Dr. Kita:
In most cases it can limit mobility, especially if you have muscle jerking at the ankles, which we call clonus, that can make your walking kind of jumpy, and that can interfere with the way that you walk. If your leg is too stiff, it might cause you to drag your toe more, as you are trying to rotate it around your foot to walk.

Dick:
Are these episodes, can they take place, with equal frequency during the day when one is awake, and during the night when you are sleeping?

Dr. Kita: No. It is again one of those pesky things where it can come and go, spasticity can be worse at night. Sometimes muscle spasms is precisely the thing that keeps most people awake at night, so it can definitely wax and wane during the day.

Dick:
I wonder if you could help us understand just exactly what is going on in the body that causes this spasticity.

Dr. Kita:Spasticity is a sign of injury to the central nervous system, and the central nervous system is the brain and the spinal cord, and ordinarily, that central nervous system is responsible for maintaining a certain degree of inhibitory control over our body. It kind of reins in the wild stallion in us, if you will, and in the same way that your central nervous system keeps you from saying four letter words in front of children, it can also exert control over muscle contraction and reflexes. So, if injury, like an MS plaque, interferes with this inhibitory control, we can have a greater difficulty reining in that stallion, and the reflexes can be very, very reactive. Because spasticity results from injury to the central nervous system, it can be seen in other disorders, like stroke or cerebral palsy or just spinal cord injury. And spasticity, as you were alluding to before, can impair movement, but it's not always a bad thing. If you have weakness in the upper part of the legs, a little bit of spasticity or muscle stiffness, can actually help your leg stay straight and stiff, so that your knees don't buckle under you. And that can be helpful sometimes for patients to walk or to transfer.

Dick:So there is a little bit of a bright side there, that maybe in transferring from bed to chair, for instance that some of that spasticity might serve as an asset.

Dr. Kita:Right.

Dick:
It is also good to know that there can be a silver lining. But, for those patients who would like more control over those spasms, what kind of treatments are available to them, Dr. Kita?

Dr. Kita:
There are a number of treatments. It is always important to remember that the goal of therapy is to increase functional capacity and to relieve discomfort. Medications that are frequently used to treat spasticity include baclofen, tizanidine or Zanaflex, various benzodiazepines like Valium. There is also dantrolene that can be used, even gabapentin or Neurontin, and finally, botulinum toxin. Now of these, the baclofen, diazepam, tizanidine and dantrolene are the FDA approved treatments for treating spasticity. As a general rule, we like to recommend initiating treatment at very low doses, and those doses need to be increased very gradually so that we can avoid adverse side effects. The goal is always to use the lowest dose that will prove to be effective for an individual patient.

Dick:
Is the use of the botulinum toxin something that is quite new, in relation to spasticity?

Dr. Kita:
It is relatively new, yes. There are some centers that aren't even using it, but we do use botulinum toxin to treat spasticity and we'll use it in both patients who are able to walk, and in individuals who are unable to walk.

Dick:
We welcome your comments about the drugs.

Dr. Kita:
Baclofen is generally my first choice of therapy. As a drug, it, enhances that natural inhibitory response of the spinal cord. It can produce some sedation, and when doses are increased too quickly, it can actually result in weakness. It is typically administered orally, but in the right setting, it can be given intrathecally and in that instance, a small pump is inserted under the skin and very small amounts of baclofen are then introduced directly into the spinal fluid. Benzodiazepines like Valium also enhance the inhibitory synapses or connections in the spinal cord, and they can also produce some degree of sedation, and I think that benzodiazepines are a great add-on, or combination agents to be used with baclofen, and I typically don't use them so much as mono or solo, therapy. Tizanidine, is another drug that can enhance the inhibitory influences in the spinal cord. Its major drawback, I think, is extreme sedation, so I found that on the whole, most patients have a hard time taking it during the day. It is, I think, one of my favorite drugs to use for night time spasms, and can really help you use a good nights sleep, so that side effect of sedation can work in your favor.

Dick:Any drawbacks that you have seen from long term use of these medications?

Dr. Kita:Generally those medications that I'm, talking about are well-tolerated long term. There are some concerns about liver toxicity and certainly sometimes as you are on them for a long period of time, we need to slowly increase the doses sometimes to get similar effects, but generally, safe to be used long term.

Dick:
I wonder also if being on the disease modifying therapy regimens, one of the ABCR drugs, has any impact on spasticity.

Dr. Kita:I do think that the ABCR medications can impact spasticity, and I guess we could look at it twofold. One would be the side effects of the drugs actually impact spasticity, and the other would be reducing the number of new lesions in the long run generally reduce the amount of spasticity that you might experience. Generally, the interferons can increase body temperature, so that when we see that, we can also see an increase in spasticity, but that is a feature that we can try to expect and then try to manage.

Dick:How soon after the first onset of episodes of spasticity might you introduce some of these drugs, like baclofen or Zanaflex?

Dr. Kita:I think that is a very individual question, and so it would really depend upon how much that patient was experiencing a symptom and how much discomfort they were. experiencing. I would not necessarily say you have to have a certain amount of spasticity for a certain period of time before we would even think about giving you therapy. We could use very small doses judiciously to try to improve your quality of life.

Dick:
Dr. Kita, many patients experience MS related symptoms such as fatigue, confusion, and depression to name just a few. Can these also be side effects from particular medications?

Dr. Kita: Yeah. You know, those are definitely some symptoms that can be made worse by the drugs that are used to treat spasticity, and for patients who already suffer from fatigue, confusion or depression, who also have bad spasticity, it can be disheartening to hear that medications to treat one symptom can in fact make others worse. But I will say that most of the side effects from the antispasticity drugs can be minimized if you titrate the drug appropriately. By that, I mean carefully and slowly increasing the dose over a really long period of time. And it is certainly important to look at how other medications that you might be taking, such as disease modifying therapies might impact some of these symptoms as well.

Dick: It sounds like a pretty individual situation carefully monitoring each and every patient.

Dr. Kita: Absolutely. Dick: And an open discussion about your symptoms.

Dr. Kita: Yes, that type of partnership and communication is very important.

Dick: Because there are a variety of treatment options for the MS patient that that experiences spasticity and mobility issues, what advice might you have for them for choosing the medications that may work best for them?

Dr. Kita:
I want to emphasize that the approach to treating spasticity needs to be broad. For instance, I think physical therapy is an essential component of an antispasticity regimen. And the answer is not always going to be in the form of a pill, but if you should decide that you want to be on a medication for spasticity, you are going to want to take precautions to minimize the side effects. Having said that, you shouldn't be afraid to experiment with the medications, because some people have very few side effects, and as you were saying, their disease is very individual and we need to treat these symptoms individually, and you might need to try many types of medications or combinations of therapies to find something that's right for you.

Dick:
As I understand it, from the number of programs that I have been involved in, almost in every case, there is an importance to that early long-term disease modifying therapy, finding the right one that works for the patient.

Dr. Kita:Absolutely. I think the treatment of the disease needs to include attention to symptoms, but definitely attention to initiating disease modifying therapies early, but then, there has to be kind of that forward look to that long term treatment plan.

Dick:And, it probably has to fit a patient's lifestyle.

Dr. Kita:Absolutely.

Dick:
Thank you very much. Dr. Blitz-Shabbir, we were wondering if you would concur that it is important to stay on a treatment plan long term?

Dr. Blitz-Shabbir:
I do, just like treating many other diseases, like treating high blood pressure. It is really important to continue on your disease modifying therapy, to continue on your symptom management drugs, like drugs for spasticity. The disease modifying therapies are needed to maintain the effect that they have on changing the course of the disease.

Dr. Blitz-Shabbir:
If you are having side effects from some of these medications, it is actually very easy to manage those side effects, you should communicate that with your care provider. If you are not doing as well as you expect to, it is important to discuss that as well. Sometimes, simply adding some treatment to affect positively some of your symptoms or affect positively some of your side effects can be the difference between being able to stay on the drug and not.
Dr. Blitz-Shabbir:We do know that these drugs were quite effective in changing the course of the disease, even though they are not cures.

Dick:
It sounds as though the dosing is very important here.

Dr. Blitz-Shabbir:The dosing of the immunomodulatory drugs is a little bit controversial.

Dr. Blitz-Shabbir:
I think the good study is the phase III clinical trials which really showed that all of the drugs out there, pretty much to a large extent, affect relapse rate about the same. There is some data with regard to disability that makes it look like maybe the Interferon is a little bit stronger.

Dick:
I wonder, Dr. Blitz-Shabbir, in your view, how would you say disease modifying drugs affect spasticity and mobility?

Dr. Blitz-Shabbir:
Similar to what Dr. Kita said. We know that the interferons have been shown to have an impact on disability progression. It reduces the likelihood of becoming progressive in the form of the disease, and it reduces the likelihood of having difficulty with mobility. We know that spasticity itself is one of the longer term effects of the disease, so if we can change the course of the disease, we can, in fact in some ways, minimize the likelihood of developing spasticity. We also know that the disease modifying therapies don't in and of themselves cause spasticity, however, sometimes, if one develops a fever, related especially initially to starting some of these drugs, any of their symptoms including spasticity, can worsen, and they can have some more difficulties walking, etc. But we have also seen now that if we premedicate patients with different medications such as Tylenol or Advil, when they are taking the medicines, we can almost completely avert this, this febrile response and we can reduce the likelihood of increasing spasticity and difficulties with these drugs. We have gotten pretty good at it over all these years.

Dick: I wonder if you'd mind, Doctor, particularly for those who may not be completely familiar with what we are talking about when we say the ABCR drugs, if you could offer a comment about each.

Dr. Blitz-Shabbir: Avonex, Betaseron, and Rebif are all interferons, and Copaxone is a polypeptide, or a protein that was developed, as were the interferons, and shown to have an affect on changing the course of the disease. What they do is decrease the likelihood of having a severe attack if you do have an attack. We know that there is excellent data, that they impact the number of new lesions or the disease burden on MRI that is going to develop. We see that very profoundly with the interferons, less profoundly with Copaxone, and we also know that the drugs have an affect on disability. The interferons have been shown to have an effect on disability although there is really no data with regard to disability on Copaxone.

Dick: I'm sure it is comforting for patients to know that there is a menu of choices out there for them.

Dr. Blitz-Shabbir: Absolutely, and we really do have to tailor our treatment program according to the patient's lifestyle, needs and symptoms.

Dick: Dr. Blitz-Shabbir, we've discussed some of the medications available to aid patients with spasticity and mobility issues, but, I wonder if you also might find yourself prescribing exercise as a form of treatment?

Dr. Blitz-Shabbir: Absolutely. Having been a physical therapist in my first life before becoming a neurologist, I am a firm believer in exercise. I talk to all of my patients about aerobic exercise. I don't think there is a single one of my patients that haven't been told or given advice about a tailored program with regard to aerobic exercise, and I think Jack LaLane is the model for everyone. He is, I think pushing 90, and I used to laugh at him, but he is now just incredible, he aged wonderfully. Not only do I advise general aerobic training, I also think that stretching is a wonderful form of exercise, as is yoga, and it also helps to alleviate some symptoms of spasticity. When patients have more difficulty, I certainly have them referred to a physical therapist or an occupational therapist, and those therapists can really tailor programs specifically to the needs of patients. It is really interesting. You know, there is good data that exercise and weight bearing alone, just standing and moving in and of itself can reduce spasticity.

Dick: Regardless of what medication regimen a patient may be using, some form of exercise will probably be appropriate for him or her.

Dr. Blitz-Shabbir: I think that is absolutely true. Given the fact that we are saying most patients in our spectrum don't have severe cardiac issues. And even if they do, under the guidance of their cardiologist, I do recommend exercise.

Dick: There are, fortunately, a number of different aids available to help MS patients increase their mobility. We certainly know about braces and canes and walkers and wheelchairs, but, what about devices that are created to take the frustration out of every day tasks? What do you find yourself recommending to your patients, Dr. Blitz-Shabbir?

Dr. Blitz-Shabbir: It is really amazing, we have become so creative. Now walkers not only come in every color, size, shape, they are tripod shape, they have three wheels, they have seats, they have carry on cases. They are totally adaptive. There is a tremendous amount of adaptive equipment and that's really in the realm of the occupational and physical therapists. I mean, we have adaptive equipment that reaches for patients. We have adaptive that can put socks on for patients.

Dr. Blitz-Shabbir: We have incredible equipment for the shower, to keep patients safe and functional, independent in the shower, things as simple as grab bars, shower chairs, to elongated shower hoses. There are just so many new things that are coming out - even devices to help people eat, certain kinds of utensils, weighted utensils for patients who have tremor. The amount of stuff out there has just increased astronomically in the last 10 or 15 years, and you really do need a good consultation with an occupational therapist often to really make sure that you can offer the patient the most in this regard.

Dick: I'm wondering, Doctor, if occupational or physical therapists help support these mobility issues that face MS patients, and I assume the answer is almost always yes?

Dr. Blitz-Shabbir: I absolutely agree. I think the big issue is that a lot of neurologists aren't trained in what a full capacity a physical therapist and an occupational therapist can do, so oftentimes, it really behooves the patient to ask the physician for a referral to physical therapy. Not only do physical therapists train muscles, improve coordination, teach endurance training. Together with occupational therapists, they work with patients on energy conservation and that oftentimes is critical in MS patients, in making sure that patients can mobilize. You know if you can do something efficiently with a walker or a cane, you can do it longer and better. If it is such a struggle to walk because you have a mild foot drop, it is really difficult to access the community, but if you can use the resources that a physical therapist or occupational can explore with you, to make it so that you have more energy, to do those daily activities, it markedly improves the quality of your life.

Dick: Because we hear about fatigue as a fairly common symptom, I would imagine this would address that as well.

Dr. Blitz-Shabbir: It's not only a common issue in MS, absolutely. It is a common issue in anyone who has any kind of disability or weakness because just their effort to walk half a block is so much greater, if you have even a mild foot drop and you don't have MS, but you also have superimposed fatigue issues, like what we see in MS. Energy conservation is a key tool to make our quality of life better.

Dick:
How important is it to encourage ongoing dialogue between you and your patients?

Dr. Kita:I can't think of anything that is more important than to maintain that dialogue and partnership with your patients. We really need pay careful attention to how the disease is progressing. We certainly hope that on a disease modifying therapy, things are going to stay the same. We want to continue monitoring the disease, we want to be looking at MRI scans as a follow up, and we certainly want to be talking about any new treatments that are coming up.

Dick:And any new symptoms that the patient may experience, I would assume.

Dr. Kita:
Absolutely.

Dick:Dr. Blitz-Shabbir, what do you do with that reluctant patient who might not be a good communicator, or somehow seems circumspect or shy?

Dr. Blitz-Shabbir:I think it is really important to be direct. If I am very direct and forthright, the patient is direct with me. And you also have to be like an investigator. If I have a patient walk into my office and say how are you, and they say they are fine. Then I ask how their bladder is, and they tell me 57 different new issues.

Dr. Blitz-Shabbir:Or if I ask how is their sexual function, then they really see that I'm comfortable and they are more apt to be comfortable with me. But in turn, even if you don't have a direct physician, I think that if we open the door, everyone becomes comfortable with the discussion, and if you don't bring to the table the issues, it can't be fixed. It is really important both to the doctor and the patient to be forthright and direct.

Dick:I want to bring back into our discussion now, Pam Saxon, whom we introduced to our audience earlier. Pam, you faced so many challenges in your life, raising two children, going through a divorce, the death of your father, as well as living with MS for more than 20 years, as you had told me. Despite these issues, you managed to keep a positive outlook. Tell us how you do it.

Pam:We are what we think. For example, a hammer has two sides, one to drive the nail in, and one to get it out. It is about choices and how you approach life, a positive or a negative outlet. And you know, until MS, I never knew the moon got brighter the higher it gets in the sky because I never took the time.

Dick:
It's amazing how living with a challenging disease can change our perspective, isn't it?

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